My memory seems lost forever

[Ohgeezitskate]

This is my 3rd year after being diagnosed with PA. My memory still hasn’t come back. I spoke with pain specialist and he just said it might never come back to the way it was. Has anyone else experienced this? Often times I forget whole conversations. Lots of details like that I said I’d do something or be somewhere at a certain time.

[addie18]

I feel that way about my memory sometimes too. I even talked to an MD psychiatrist and explained that before b12 supplements, I attributed to the memory loss to being in a bad mood, being tired, etc. But after b12 supplements, those other problems went away, making memory loss more prominent as a separate symptom. They have some things they can try for that.

[deniseinmilden]

It's 3 years of daily SI and lots of supporting supplements for me too and I am getting more memory back all the time. I have pretty much daily celebrations of it!

It appears memory has 2 parts: memory input and memory recall.

When I was at my worst I had neither. After a while they both started to work again.

I still have "lost" the 2 or 3 years where I was at my worst as I had no memory input so I have nothing in my memory bank to recall from that time. I've got used to the fact that I have a warped sense of time... But at least I feel younger than I am!! 😁

Now I have started to be able to remember again I am gradually building up a remembered base of things to help me cope - e.g. I have found out from the vet's records that my cat is 9 and I can remember that and add to it, to compensate for the fact that I can only remember 6 years of him being with me! (Thank goodness he didn't die in my "lost" years!)

Everyone is different and if you are perfectly well in every other way then you may have to just work out other coping strategies...

But if there's anything else less than perfect I would suggest trying more B12 and supporting supplements, particularly folate once you can't get any further improvement from additional B12.

It's got to be worth a try!

[Ohgeezitskate in reply to deniseinmilden]

Thank you!

[ACritical]

Yes, I stopped reading books etc. I knew I read and found it interesting but could not tell myself why and what I had read. It took quite a few years

for my memory to get better. I now read books, articles online as well as work documents and I can comprehend again what I read, although my speed reading is no longer as speedy as it once was.

[Linda730]

Hi, Ohgeeziskate

I tell everyone I lost my memory when I was 25, 40 years ago. Truth is, I lost the ability to either retain or access memories after that point, except for momentary episodes. I still don't know if that was my first indication of PA, but it was the culmination of massive stress. Anyway, I wasn't diagnosed as b12 deficient until my 40s, so I'm assuming it has become permanent.

Despite many tests, I have never been diagnosed with a memory condition. Either I don't explain it right or I've been to the wrong doctors. Recently I found a condition called anterograde amnesia, which explains my memory exactly, although it's not as severe as most cases I read about. I only remember details if I write them down (and remember where I wrote it!)

I am missing years of my life - like they never happened. I try not to promise anything if I can't do it immediately, but of course I will anyway because I tell myself this time I'll remember. It's affected social interactions. Sometimes I forget people entirely, or names of long time friends, and definitely details of people's lives.

However, if you don't stress about it too much, there are ways to adapt. A good friend or partner can be a miracle. I think I'm just tired of explaining why I seem so uninterested, which I'm not.

Stay hopeful 🌻

[Ohgeezitskate in reply to Linda730]

Wow. I don't have years missing but my friends and family are constantly reminding me of things I've forgotten. It makes me feel terrible. I've taken to telling new people that if I forget things it's not that I don't care what we've talked about it's that I just don't remember. My dear friend recently played a trick on me and told me that I had been calling her boyfriend by the wrong name for months. I believed her because it's not out of the ordinary.

[deniseinmilden]

I did stop chiding myself for everything "I have forgotten" or "don't remember" and instead accepted I had no memory... And then started just being pleased with myself every time I did remember something! It's just a different way of looking at it and much more positive on yourself. You can't help getting ill or being damaged but you can help yourself get better and manage the problems and that is worth lots of positive recognition!

[Ohgeezitskate in reply to deniseinmilden]

Thank you! Great insight.